SearchAn update following the governments response to our England petition
- 28 July, 2023
- EDS UK news
In May 2023 we launched our #EnoughIsEnough campaign to call upon the governments in England, Scotland, Wales and Northern Ireland to fund or commission suitable NHS services for those with hEDS and HSD. A key part of the campaign is a petition in each part of the United Kingdom. On 5th July the government responded to our England petition and you can view their response here.
Earlier this week we wrote to the Petitions Committee to express our extreme disappointment with the government’s response to our England petition and to clarify that their solution of the Major Conditions Strategy would not be sufficient for everyone with hEDS or HSD. We reiterated the need for commissioning suitable services and asked for an opportunity to discuss and explain why both the Rare Disease Framework and the Major Conditions Strategy would not solve the issues our community are living with. We also explained that there are no validated approved clinical guidelines or tool kits. We got a response back from the Petitions Committee this week with some advice on next steps.
We will write to the Department of Health and Social Care directly to ask how the Major Conditions Strategy will help when it will only cover musculoskeletal symptoms and not the full range of symptoms/issues that people with hEDS and HSD experience. We will express our concern that this strategy will also fall short. To truly provide the services, diagnosis and treatment that our community needs, will require a multi systemic approach, support for healthcare professionals and funding to deliver this. Only through listening to the very people that are living with this every day, will we be able to design and deliver services that will make a transformational difference to the lives of those with hEDS and HSD. Enough really is enough and we call on the government to speak to us in order to find a way to make the system work.
Thank you so much for your help, we are being heard and we will change things. Please keep sharing the petition, writing to your MPs and ask your MP to table a parliamentary question ‘How does the government propose to cover the full extent of symptoms that people with hEDS and HSD experience when the Major Conditions Strategy will only focus on musculoskeletal symptoms for people with EDS?’
Enough is Enough – let’s keep going!”